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White Paper: Monitoring health after transplantation

The steering committee of the ESOT patient inclusion initiative endorsed a call for a European effort to collect follow-up data on transplant recipients and living donors. Read more

October 16, 2023 | General | Patients


ESOT started building a platform to host pan-European registries in January 2021, leveraging on the experience of its section ELITA which had been successfully coordinating the European Liver Transplant Registry since 1985. The platform was thought of as modular, scalable and able to receive information on different organ transplants: a one-stop solution for European national and local authorities to contribute data and share practice with the community.

  • January 2021: Launch of the project
  • February 2021: The EPITR scientific committee start work on the development of a pancreas and islets transplant registry
  • December 2021: Dendrite Clinical System is selected as the technical partner to design, develop and implement the platform
  • April 2022: the ESOT Council approves the Governance of the registries project
  • April 2022: 1st General Assembly

In September 2023, the Committee of Ministers of the Council of Europe issued recommandation to member States on establishing national harmonised organ transplant registries with a view to facilitating international data sharing.  In particular it recommends that the governments of member States promote the development and maintenance of national transplant registries with a view to facilitating harmonisation of the said registries and international data sharing. ESOT welcomes this recommendation and glady makes its registries platform available to transplantation centers, competent authorities and ministers.

ESOT is a member of the European Health Coalition, a network that aspires to health and care systems centered on people and patients. To make this vision a reality, the European Health Coalition has put forward nine recommendations focusing 4 priority areas (Digital transformation, Health system integration, Boosting research and innovation, Access to innovation). The ESOT registries are in line with all these recommendations, particularly the following ones concerning data and digital health:

  • Enable the collection of standardised, high quality and relevant health data in a secure manner to improve healthcare delivery, enhance research and drive greater efficiency of healthcare system.
  • Build a positive ecosystem fostering greater coordination and collaboration on Artificial Intelligence across the EU, and between different disciplines, to enhance the trustworthy and ethical use of AI in healthcare.



The ESOT registry platform will serve a variety of stakeholders, including competent national authorities, national/regional/local transplant registries, national and international scientific review committees, transplant centres and individual professionals, patients and donors (families), and the general public. To take into consideration all voices of the transplant community, the ESOT Council has put much effort into establishing an inclusive governance of the registry project.

  • The General Assembly represents data contributors and acts as an advisory body. It ensures that the registries can comply with the existing legal, scientific and ethical regulations, and it advises the Steering Committee on developing the strategy and establishing new registries.
  • The Steering Committee is responsible for developing the strategy of the ESOT registries platform and submitting it to the General Assembly. It promotes the registries platform and invites new registries contributing members to the General Assembly. It supervises the budget and finances, and reports to the General Assembly.
  • The Scientific Committees are composed of renowned professionals in the field of transplantation. They are responsible for defining the set of variables to collect and the expected outcomes of the registry. A scientific committee is created as soon as the Steering Committee approves the proposal for a new registry.



Read more about the Governance of the ESOT Registries platform



ESOT raises funds according to the strategy agreed upon by the Steering Committee with the aim of maintaining the technical infrastructure, providing technical support for users of the registries and widening contacts with participating or interested parties, scientific consortia, the industry and patient associations.

In agreement with its bylaws (Art. 7), ESOT calls for donations, sponsorship contributions, inheritances and legacies to support the registries platform project.

Download the Registries sponsor brochure

GDPR Compliance

ESOT is fully committed to ensuring compliance with the General Data Protection Regulation (GDPR) to safeguard the privacy and confidentiality of individuals’ data within the ESOT Registries. GDPR sets out strict guidelines and standards for the collection, processing, and storage of personal data. ESOT understands the sensitivity of the data collected within the registries and takes extensive measures to protect the privacy rights of individuals involved.

To comply with GDPR, ESOT implements robust data protection policies and procedures, including the implementation of appropriate technical and organizational measures to ensure data security. Access to personal data is strictly controlled and limited to authorized personnel with a legitimate need to access such information. ESOT also maintains data protection agreements with third-party partners and collaborators to ensure that personal data is handled in accordance with GDPR requirements.

ESOT recognizes the importance that centers obtaining informed consent from patients for the collection and processing of their data within the registries. Transparent information is provided to participants, outlining the purposes and legal basis for data processing, the rights of individuals, and how their data will be protected.

ESOT is dedicated to ongoing monitoring and review of its data protection practices ensuring compliance with GDPR and evolving best practices. By adhering to GDPR standards, ESOT aims to foster trust, maintain data integrity, and protect the privacy of individuals contributing to the ESOT Registries.

As a data controller, ESOT appointed a Data Protection Officer (DPO) and a legal advisor to conduct the GDPR compliance procedure. The ESOT registries task force has established a data processing agreement (DPA) with the technical partner providing the infrastructure of the platform as well as data sharing agreements (DSA) with data providers. An independent Data Protection Impact Assessment (DPIA) has been conducted and can be consulted under request to the DPO (dpo@esot.org).

Data collected on the Registries Platform will be stored in the EU (Ireland); they will be processed by Dendrite Clinical Systems, a UK-based company; data will be released in an aggregated form only. The risk of a data breach is kept at the minimum possible as described in the ESOT Data Breach Protocol (DBP).

ESOT registries task force

Luciano Potena
ESOT Past President 2023-2025
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Gabriel Oniscu
ESOT President


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Olivier Thaunat
ESOT President-elect


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Geir Mjoen


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Devi Mey
Chief Executive Officer
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Vincent Karam
General Manager – ESOT Registries
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Daniele Roppolo
Scientific Advisor
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